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alzheimer’s disease & dementia

Early-Onset Alzheimer’s Disease

Being diagnosed with younger-onset Alzheimer’s can leave you feeling shocked, angry, and deeply anxious about the future. But there are ways to cope with the diagnosis, adapt, and move forward with your life.

What is early-onset Alzheimer’s?

Alzheimer’s disease is a form of dementia that results in a decline in cognitive function, such as memory loss, and changes in behavior and thinking. Although the disease is most common in older adults, it can develop as early as your 30s. When the disease develops in a person under 65, it’s considered early-onset Alzheimer’s. About five to 10 percent of Alzheimer’s cases are early- or younger-onset.

An Alzheimer’s diagnosis can come as distressing news at any age, but an early-onset case can be especially traumatic. You may question if the condition will bring a halt to all of your future plans, prevent you from advancing in your career, or if you’re single, ruin your hopes for a romantic relationship. If you have a family, you’ll likely be concerned about their future well-being, financial security, and even their perception of you as an independent adult.

While there’s no cure for Alzheimer’s, you aren’t completely helpless. There are many ways to cope with the diagnosis and help yourself and your family and friends prepare for the future. There are also steps you can take to slow the progression of symptoms and preserve your quality of life for longer.

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Causes and symptoms of early-onset Alzheimer’s

The causes of early-onset Alzheimer’s disease aren’t entirely clear. In most cases, the disease seems to be sporadic, meaning it’s unrelated to family history. However, certain inherited gene mutations may increase the risk of you developing the disease, and rare deterministic genes guarantee the development of the condition.

Initial symptoms of early-onset Alzheimer’s may be similar to those of late-onset Alzheimer’s. You may gradually notice these symptoms in yourself and wrestle with mix of denial and fear. Or other people may bring the signs to your attention. They can include:

Forgetfulness. Important dates and details of events might frequently slip your mind. Perhaps you find yourself asking people to repeat information more often than usual. Or maybe you consistently lose items or lose track of where you are.

Difficulty with problem-solving and completing complex tasks. You might have a harder time following recipes or DIY instructions, or completing difficult tasks at work, for example.

Difficulty with processing visuals or spatial awareness. This can manifest as having a hard time comprehending text you’ve just read or experiencing depth perception problems.

Conversational issues. You may have an increasingly hard time finding the right words while talking to others.

Poor judgment. You might start to make bad financial decisions or make insensitive comments while talking to others.

Changes in personality. You could find yourself in a depressed mood or feel apathetic about things that once gave you joy. Depression can also leave you feeling physically and mentally fatigued.

Social withdrawal. You might become less willing to engage with other people or leave your home, perhaps out of a sense of fear or shame about other symptoms.

[Read: Alzheimer’s Disease: Signs, Symptoms, Causes, and Stages]

In the later stages of younger-onset Alzheimer’s, you may experience increasing bouts of confusion, worsening memory loss, and severe mood swings. Difficulty with basic functions like walking and talking can follow. All of these changes can understandably weigh on your mood and contribute to persistent feelings of hopelessness and frustration that make it harder to take the necessary steps to extend your independence.

Diagnosis and misdiagnosis

Doctors typically use a variety of tests before reaching a diagnosis of younger-onset dementia. They’ll likely take a detailed look into your medical history and have you undergo physical and neurological examinations. A psychiatric evaluation may help rule out a mental illness.

Scans can be used to identify changes in different areas of your brain, while cognitive tests can assess your reasoning, memory, and comprehension skills.

Many people associate Alzheimer’s with memory problems. However, symptoms of early-onset Alzheimer’s may not necessarily include forgetfulness, leading to a misdiagnosis.

A decrease in focus may be attributed to a stress-related issue, for example. Or a doctor may conclude that your increasing apathy is the result of depression. A decline in visual processing can similarly be attributed to eye problems. Getting an accurate diagnosis can help you take steps to address the actual problem and work to maintain your quality of life.

Coping with a diagnosis

Not everyone reacts to news of an early-onset Alzheimer’s diagnosis in the same way. You might feel anger over the thought of having to face this problem at such a young age. It can feel deeply unfair, and you might grieve what feels like the loss of your future and identity. Conversely, you may feel numb, experience a sense of denial, or want to withdraw from the world as you try to process the diagnosis. Or you may even experience all of these conflicting emotions at once.

There’s no “right” way to respond, and the different feelings may come and go in waves. Be patient with yourself and allow yourself time to come to terms with your diagnosis and what it means for your life and loved ones.

[Read: Coping with an Alzheimer’s or Dementia Diagnosis]

Don’t try to suppress your emotions. Take time to acknowledge the negative feelings you’re experiencing. You might consider journaling your emotions or talking to a close friend, confidant, or therapist. However, try to avoid blaming yourself for the condition. Using HelpGuide’s Emotional Intelligence Toolkit can help you learn to manage the very difficult emotions you’re experiencing at the moment.

Seek early intervention. As soon as you recognize symptoms, turn to a professional for testing. The sooner you’re diagnosed, the sooner you can work to address your symptoms. Doctors can also help you manage comorbid conditions, such as hypertension or other vascular health problems, that may be contributing to your symptoms.

Know that your diagnosis doesn’t define you. You may feel the weight of the social stigma about the disease, worry that people will start to baby you, or suddenly feel older than your years. But it’s important to remember that you’re still you, the same person you were before the disease. Rather than allowing yourself to be defined by the diagnosis, emphasize the things that do define you as a person, whether it’s your role at work or as a parent, spouse, friend, artist, volunteer, or hobbyist.

Learn about the disease. Research as much as you can about Alzheimer’s disease, including how the disease usually progresses and the common misconceptions. Talk to other people who are coping with the disease or learn about their experiences through books and videos. All of this can make you feel better prepared for what lies ahead. During your research, you’ll also discover what steps can help slow the progression of the disease.

Living with early-onset Alzheimer’s tip 1: Talk to your loved ones

You might feel the urge to keep the diagnosis to yourself or even withdraw from those closest to you. However, opening up to others will not only help you share the burden of your diagnosis and get the social support you need, it can also prepare your loved ones for obstacles they may encounter ahead.

Expect a variety of reactions. People around you may react to the diagnosis in different ways. Some of them may treat you as if you’re completely helpless and need everything done for you, while others could exclude you from future plans. Set your focus on friends and family who take the time to understand what you’re going through and what you need at this challenging time.

Set boundaries. A well-meaning partner may feel the need to take on all the responsibilities around the home. This can be a frustrating experience and make you feel infantilized. It’s important to speak up and set boundaries to maintain your sense of independence. You can simply say something like, “I appreciate your concern, but I can still handle setting my own appointments.”

Expand your support network. If you’re living alone, consider fostering closer connections with local friends and neighbors who can check in on you or be ready to help if you ever need assistance. You can also rely turn to support groups that focus specifically on early-onset Alzheimer’s and connect with others who understand what you’re going through. If you’re spiritual, reach out to your religious community for support, or consult a therapist, either in-person or online.

Talking to your children

If you’re a parent, your children may respond to your diagnosis with shock, fear, and worry about the future. An ongoing dialogue can help them cope with the news and understand the changes they can expect.

Tailor your message to your child’s age. Teens might understand some of the more complicated details of your diagnosis, such as how brain cells will gradually die off. However, you’ll want to stick to more basic terms or familiar analogies when talking to young children. Work with other family members to brainstorm ways to convey your message to your kids. Write down your thoughts beforehand if necessary.

Be ready to answer their questions. Kids and teens are bound to be curious. Be patient and address their questions as best you can. If you don’t have an answer to a question, simply say so. Remember, this doesn’t have to be a single conversation. 

Let them know it’s okay to feel upset. You might feel that it’s important to maintain your composure and speak in a reassuring tone. However, don’t be afraid to cry or express yourself in front of your children. This helps them to understand that grief is a normal reaction, rather than something to hide or run from.

Let them know how they fit into the bigger picture. When talking to teenagers, you might want to address changes in responsibilities. Don’t make them feel as if they suddenly have to support the entire family, but be realistic in addressing how things may change around the house. For example, you can say that you may need a little extra help with daily chores.

Preparing for your family’s future

It can be tempting to avoid thinking about the future, especially when things feel so bleak. However, forethought and planning can help ease stress and make life easier for both you and your loved ones.

Start thinking about an advance health care directive and living will. What kind of health care instructions do you want to leave for your loved ones for when you’re unable to make decisions later? Will you want in-home care or prefer to stay at an assisted living community? You can develop a plan through candid conversations with your physician as well as your family members.

[Read: Effective Communication]

Plan for future finances. If you’re a provider for your family, work with your loved ones to develop a plan to maintain their financial well-being. For example, you might determine you need to cut back on spending or adjust how much you or your partner works. Consulting a financial advisor may be helpful.

Tip 2: Take steps to slow the progression of the disease

Although there’s no cure for early-onset Alzheimer’s, your doctor may prescribe specific types of medication, such as donepezil or rivastigmine, to help improve mental functioning. New medications are also being developed all the time. Then there are lifestyle changes you can make to keep your brain and body healthy and even slow the progression of the disease.

[Read: Preventing Alzheimer’s Disease and Dementia—or Slowing its Progress]

Exercise. Even if you were active before your diagnosis, you may have a hard time finding the motivation to keep up with exercise now. But a physically active lifestyle can help to delay the progression of early-onset Alzheimer’s and help preserve your independence. Whether you enjoy basic physical activities, such as walking and running, or team sports, aim for more than 2.5 hours of exercise per week.

Stay socially engaged. As your symptoms progress, you may worry about being a burden on others and withdraw from social situations. However, loneliness and isolation can have a negative effect on cognition. Rather than isolate, try to remain socially active. Look for clubs or volunteer opportunities that widen your social network or simply commit to spending more time with friends and family.

Pay attention to your diet. When you’re feeling overwhelmed by a life-changing diagnosis, it’s natural to turn to sugary or unhealthy foods for a quick mood boost. However, a healthier diet may play a role in slowing your rate of cognitive decline. Try following the Mediterranean diet or DASH (dietary approaches to stop hypertension) diet that prioritize fruits and veggies and minimizes unhealthy choices like red meat, sodium, and sweets.

Seek mental stimulation. Cognitively stimulating activities can help keep your memory sharp. Consider doing daily puzzles and brainteasers, taking classes, or pursuing new hobbies such as reading, writing, or learning to play a musical instrument.

Get enough sleep. The emotional toll of your diagnosis can make it difficult to sleep. You might find yourself lying awake at night, worrying about your family’s well-being or what the future has in store. However, sleep deprivation is associated with cognitive decline. So, take steps to improve your sleep, aiming for seven to nine hours of quality rest each night.

Manage your stress levels. Being told to “slow down and relax,” might seem like unhelpful advice when life feels so uncertain. But know that too much stress can accelerate neurodegenerative diseases like Alzheimer’s and worsen your symptoms. To help manage your stress levels, set aside 10 to 20 minutes each day to practice a relaxation technique, such as deep breathing, meditation, or visualization. Rhythmic exercise is also a great way to reduce stress, as physical activity floods the brain with feel-good hormones.

Monitor your vascular health. Many of the above tips, such as watching your diet and managing stress, can also improve your heart health and help to keep your brain healthy. You can also take additional steps, such as quitting smoking or limiting your alcohol intake. Make a habit of tracking your blood pressure and taking steps to treat symptoms of hypertension.

Tip 3: Continue to seek meaning and purpose

A diagnosis of early-onset Alzheimer’s can make you feel as if your life has been stripped of meaning or that you can no longer contribute to the lives of those around you. But even when things seem bleak, filling your days with activities that are meaningful to you can help reinforce your sense of identity and remind you that you have plenty of life left to live.

Keep up with your hobbies and interests. Continue to embrace your passions, whether they include tending to your garden, traveling abroad, or playing team sports. Your creative outlets are also an important way to maintain a sense of meaning, so paint, write, sing, or enjoy other forms of self-expression.

Look for opportunities for growth. It’s never too late to expand your list of hobbies. Consider taking a community college class to learn new skills and connect with new people. Practice a new language, learn to play a musical instrument, or try your hand at digital design. New learning experiences can also help keep your mind active.

Raise awareness of the disease. Use your skills and personal experience to draw attention to Alzheimer’s disease. You could use social media to help address the stigma or spread the word about clinical trials and research. You can also take part in clinical trials yourself and help advance the search for a cure.

Tip 4: Adjust your environments

Even the initial symptoms of younger-onset Alzheimer’s can leave you feeling frustrated and anxious. Adapting your home and work environment can be an empowering exercise to counter those negative feelings. 

Use tools like calendars, to-do lists, and planners to organize your days and tasks. These can help you cope with any memory issues. Electronic reminders on your phone can be useful when it comes to keeping up with important dates. Have a designated spot in your home for your organizing tools so you never lose track of them.

Come up with a list of tasks that can be handled through automated means. For example, you can use automated payment options to ensure your bills are paid on time every month. Technical solutions, such as smart thermostats, can also be handy around the home.

Simplify your space. As your condition progresses, you may have a harder time focusing. One way to counter this is to reduce the amount of distractions and extra clutter in your home. Turning off the TV may help you to better concentrate on reading, for example, or tidying your desk can make it easier to keep track of what you’re doing. Aim for a more minimalistic approach.

Adapting your work environment

If you’re comfortable sharing your diagnosis with your employer, you may find that reasonable work accommodations are available. These could include:

  • Changes in how many hours you’re required to work.
  • Labeled or color-coded items for better organization.
  • Verbal reminders throughout the day.
  • Changes in how certain tasks are performed.
  • Written instructions for multi-step tasks.
  • Minimizing of office clutter.

Moving forward

As your symptoms change, continue to make lifestyle alterations that better match your needs. You may want to seek additional accommodations from your employer, for example, research disability benefits to help ease the financial burden, or ask your spouse to take on certain tasks that you used to handle.

Be willing to adapt when necessary, and lean on friends and family to help you adjust to the changes. Also, take time to savor the present, treasure your interactions with loved ones, and stay engaged with your interests and the wider world.

Author: Sheldon Reid

    Get more help

    Alzhiemers.gov – Find Clinical Trials – Tool to find in-person of online clinical trials

    Alzheimer’s Foundation of America (AFA) – Support and services for people living with Alzheimer’s

    Alzheimer’s Association – Virtual Support Groups – Tool to find virtual support groups

    Find support

    In the U.S.: Call the Alzheimer’s Association helpline at 1 800 272 3900 or the Alzheimer’s Foundation of America at 1-866-232-8484.

    UK: Call the Alzheimer’s Society helpline at 0300 222 1122 or find support near you.

    Australia: Call the Dementia Australia helpline at 1800 100 500 or find support in your region.

    Canada: Find an Alzheimer Society in your area.

    India: Call the Alzheimer’s and Related Disorders Society of India 24-hour helpline in your area.

    In other countries: Browse a worldwide directory of Alzheimer associations for information, advice, and support near you. (Alzheimer’s Disease International)

    Last updated: August 30, 2022